As the Mum of a type 1 diabetic, I was very moved by the online responses during one night to a simple question posed by a Mum in one of our former Closed groups on Facebook. The Community spirit of these Mums is just wonderful. We are all heroes, it is a quiet herosim, a desperate, exhausting heroism: but our love and care for our children is all that matters. It can be all consuming, and it is important to have support. For some people, an Online community is the Lifeline that keeps them going.
Helen Wilde Moderator Diabetes Can’t Stop me updated 30/03/17
MP ‘2 a.m. Who else is up checking their child’s bgl?’
JL ‘I am. good bgl but can’t get back to sleep’
MP ‘I’m just about to check S…… again, haven’t been to sleep yet. Getting 2 hourly obs to find out what’s happening at night. I think her basal is wrong. Having 15+ bsl. She woke up in 19s this morning. New to pumping S…..’s only been on one 3 weeks tomorrow.’
JL ‘My ds is mdi. Seems to be so much involved with pump – does it get easier?’
MP ‘3.6 🙁 ‘
JL ‘Looks like a long morning for you. Hopefully you can rest tomorrow‘
MP ‘I’ve been told it does, the Benefit of being on pump is good, we like the ‘less needles’, we have a set change every 2 days. And in that time she would’ve had a min of 26 injections before the pump. So that’s a great thing for us. it’s been hard on S… getting used to set changes very challenging, S….. was having a lot of aggressive melt downs and just out right refusing set changes. That’s heaps better now and nothing compared to before. These 3 weeks have been hell with bgl’s they are all over the place. But won’t be long and we will have the ratios, corrections worked out. With injections S….. had 5 different insulin carb ratios, and 4 different insulin sensitivity/ correction ratios. So it’s like starting all over again on pump, working them out.’
D ‘One reason why my relationship has failed. He isn’t the father but doesn’t understand how I am ‘that tired’ all the time!‘
MP ‘Very long morning J….! fingers crossed the school doesn’t need me tomorrow, and my 2 year old has a nap lol. Or one cranky mum tomorrow. It’s hard isn’t it D….. it takes it out of you all the sleep you miss out on. I swear I’m just on auto mode during the day, being a mum to 3 and a step mum to 3, 4 tea times a fortnight and every 2nd weekend. No one really understands except type 1 mums who do everything you have to do. I’ve been lucky my partner is great. He says all the time that going to work every day is much more easy than what I do with S….. every day/night.
3.4 still, this bgl isn’t wanting to budge. Re-treated hypo, now the wait.’
KR ‘I am awake and wondered what my 20 year old son might be. He moved in with friends on Fathers Day.‘
DP ‘Good luck M…….. I just checked my girl & she’s 6.6… going to try & sleep now!
P.s. wow! I bet it is a lot of fun too although tiring.‘
MP ‘9.3 and we are back out of hypos. Correction needed though! Oh, when does it get easier? Oh KR, that must be a big change for you not having your son in your sight as much. And also a worry too, S….. is 8 but was diagnosed a type 1 diabetic, then 2 weeks later blood results indicated coeliac disease. She had the biopsy and it was confirmed. Does the worry become less or more when they are older?’
MP ‘Nighty night D….. Great numbers!!! Well done mum’
KR ‘He also bought a motorbike for transport 2 days before moving out so it has been a worrying week.‘
M ‘I reckon it has. Well I’m off to sleep, before the rugrats wake up. nighty night.’
L ‘11.30pm, 1.30am, 3.30am and 5.30am. I’m staying up now. No point going back .‘
M ‘I’m beginning to think nights are worse than days. At least during the day you can keep an eye on them. We often have 2 hourly alarms set at the moment. Doesn’t sound like this ever gets much easier.’
MP ‘2am go to test e-6 error go looking for another machine. 11.8 but cgm says 14.7 , let him sleep , now I must sleep.’
MH’It does get easier. 🙂 but it’s always going to be a juggling act and you will still get your highs and lows and scratch your head as to why. Sometimes it doesn’t make sense! that’s the fun of diabetes. I had to check my son constantly through the night when he was on Lantus but since changing to Levemir he is much more stable through the night. No where near as harsh as the Lantus for my boy.’
J ‘Non d mums miss out on our special club right! Just think how easy everything else is after dealing with this! Good on us!‘
AK ‘Reading these posts brings back so many memories of alarm setting and no sleep. 4 years down the track now and we still check at night ( we will always) but we rarely set alarms now. The last one up at night deals with bgl then. One of us will wake up next and check. I am feeding a 4 month old baby so will check after a feed if I can or wake my husband for him to do it. First up in the morning checks again. No more than 3 hours passes at any time, most nights. Our daughter wears a CGMS and the low bgl alarm will often wake her, and she comes to me saying, “I’m hypo mum! “
So, the point of all this is that we are awake every night but try to share it as otherwise one of us is exhausted the next day. It does get easier, as insulin regimes get sorted too. Hang in there!
Ps we have just become used to a chronic sleep deprivation too!’